SSA should collaborate with other federal agencies on the design and implementation of the monitoring system.

CHARACTERISTICS OF A DISABILITY MONITORING SYSTEM

The committee defines a disability monitoring system as an ongoing systematic collection, analysis, and interpretation of data essential to the planning, implementation, and evaluation of the Social Security Disability Insurance (SSDI) and the Supplemental Security Income (SSI) programs, closely integrated with the timely dissemination of these data to those who need to know.

Monitoring systems typically rely on a variety of data sources originally designed for other purposes such as, but not limited to, the national surveys of the National Center for Health Statistics (NCHS), the Bureau of the Census surveys, and administrative data. No single standard exists in the design of monitoring systems; rather, they should be designed to meet the specific purposes of the specific system. Developing a monitoring system is not dissimilar to the design of a complex survey consisting of multiple components. The components depend on the objectives of the system. The utility of a monitoring system is a function of the extent to which the data are used to make decisions, set policy, or implement changes and is evaluated in terms of the objectives of the system.

Disability (for adults) is defined in the Social Security Act as inability to engage in substantial gainful activity because of a medically determinable physical or mental impairment lasting at least 12 months. Therefore, one of the challenges in thinking about the design of a disability monitoring system is to understand how shifts in the nature of work over the past 40 years and into the future affect the meaning of disability, and to make this operational in household surveys and administrative databases. As stated earlier, of interest in the disability monitoring system is not simply the measurement of prevalence and the socioeconomic and demographic conditions linked to disability, but also understanding changes in both the individual and the environmental factors that lead to changes in appli-

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Much of the information in this section is drawn from the background paper “Survey Design Options for the Measurement of Work Disabilities,” commissioned from Nancy Mathiowetz for use by the committee. The committee appreciates her contribution. The full text of her paper can be found in Part II of this report.